Hello Tea6

I noticed you hadn't yet received a response and just wanted to drop by and say hello. I am so sorry to hear about your mum and I hope the surgery goes well for her next week.

I thought I'd share with you the detailed information that is on our site on bladder cancer which you can access here. I am sorry to hear communication hasn't been great so far and that you have many unanswered questions it must be really stressful for you and your mum. I hope you can manage to pin someone down and talk to someone and ask all these important questions.

I hope all goes well for your mum and that the surgery is a success - keep us updated if you can on her progress. And if you have any questions, don't stay in the dark, our nurses are available on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm.

Someone with experience of bladder cancer will hopefully be along soon too to share their story with you and answer any questions you may have.

Best wishes to you and your mum,

Lucie, Cancer Chat Moderator

Hi Tea,

I am so sorry to hear of your mum's diagnosis. It does sound as if communication has been poor between her and her care team. Did she attend her appointment on her own? It is always a good idea for someone to go with her to her appointments, as it is impossible to remember everything that is said in a consultation and, a bit of moral support is always welcome.

It is also a good idea to write down a list of questions for her consultant, to ensure that you don't forget anything important. I agree with Lucie, it might be worth phoning the consultant's secretary this week and asking if you can speak to someone who can answer her questions, before she goes for surgery. She will need to sign a consent form before surgery, stating that she understands what is happening and why she is having surgery. It is hard to do this when she doesn't know.  I certainly wouldn't be consenting to surgery, before I knew that it was essential.

I am afraid that I cannot tell you exactly what will happen, as I have breast cancer and know little about bladder cancer. I hope that someone who knows more will come along to talk to you.

I sincerely hope that her operation goes well.

Please let us know how she gets on. We are always here for you both.

Kind regards,

Jolamine xx

Hi my husband has just had a TURBT and like your mum he's still in the dark so to speak with lack of communication from the NHS.   Was just given printed general brief details of what to expect.  No idea about his cancer, size etc.    It went from blood in urine one day then very quick appointments only to have his operation cancelled twice on him!.  He left hospital yesterday without a doctor speaking to him and nurse said we don't have notes on this ward and you will be called back for an appointment in 3 weeks to get the results.   All seemed a bit poor as it's a worrying time and some info is better than nothing.  

Not sure if another appointment 5 days after surgery is wise though. Hubby has little control over his bladder today and I've read this can take upto 5 weeks to get back to normal.   Good luck to your mum with her op and hope everything goes well.  X